On the left side of the entrance gate were two streets about a block long and running parallel to each other. Along these two streets sat neat, clapboard staff houses, shaded by more towering live oak trees. Upon his arrival in Carville, Paul was shown to a large four-bedroom house on the first street. The rambling house had been built in the 1920s and had large windows that could open wide, high ceilings, and a veranda on either side. Paul decided it would be the perfect place for his family.
After he had moved in, Paul acquainted himself with more of the history of his new home. In the early 1890s the Louisiana legislature had decreed that the old, rundown plantation in Carville would be the new home for citizens with leprosy. The first seven patients were brought to the site hidden on a coal barge from New Orleans, as it was illegal for anyone with leprosy to ride on public transportation. Those patients moved into the old, crumbling slave quarters that were infested with bats, malarial mosquitoes, and snakes.
No one was willing to move to Carville and care for the leprosy patients there, until four nuns from the Daughters of Charity took up the challenge. They cared for the patients, whose number continued to grow steadily, and worked hard to clear land and repair the dilapidated buildings. Eventually the U.S. Public Health Service took over the facility, but the nuns remained and continued to work tirelessly.
Over the years, great strides had been taken in the care of leprosy patients at Carville. Paul noted that it had been the first institution in the world to begin using the relatively new sulfone drugs to treat leprosy. Even in the progressive United States, however, leprosy patients faced many of the same prejudices as those with the disease in India and other parts of the world. Once a patient arrived at the facility, he or she was not allowed to leave. Barbed wire was strung along the top of the fence, and guard towers were installed to stop patients from trying to escape. Newly arrived patients were told to sever ties to their families, and those who were married were encouraged to divorce and let their spouse go on with his or her life. All those who arrived at Carville as patients had their civil rights revoked and were not allowed to vote.
Paul was glad to learn that things had begun to change during the 1950s. The barbed wire was removed, the guard towers were torn down, and patients were given back their civil rights. With the use of new drugs to kill the leprosy bacilli and arrest the spread of the disease, patients were no longer required to live at the institution, though many still chose to do so. After all, some of the patients had spent thirty or more years living at Carville. The institution was home to them, and they had nowhere else to go.
Paul was settled into the house by the time Margaret and the youngest two girls, eleven-year-old Patricia and eight-year-old Pauline, arrived at Carville in January 1966. Patricia and Pauline immediately began collecting pets. Before Paul knew it, he was sharing his house with a cat and kittens, a collie dog and her puppies, and Simon, an inquisitive baby skunk! Meanwhile, Peanut—the pony—lived in the stable out back.
Paul soon learned of an unfortunate consequence to Dr. Johnwick’s sudden death. The staff surgeon at the facility apparently did not want to lose his position in the department and had persuaded Johnwick’s replacement to withdraw the offer for Paul to be head of surgery. Instead, Paul was instructed that he could work only as the head of rehabilitation.
At first this devastated Paul, who had been a surgeon for twenty years, was world-renowned in the field, and had lectured all over the globe on surgical practices. Paul had even turned down an offer to be groomed for the position as head of surgery at the Royal National Orthopedic Hospital in London because it would not allow him to continue his leprosy work. For similar reasons he had also turned down an offer to become chairman of Orthopedics at Stanford University medical school in California. Paul took a deep breath and decided to trust God to work out the situation.
Chapter 16
Carville
You have to visit Stanley Stein,” Paul’s assistant told him soon after his arrival at Carville. “He’s a legend here.”
Paul smiled. “And at Vellore too!” he replied. “We always looked forward to getting The Star newspaper. What an honor it will be to meet the man who started it.”
The assistant grimaced. “Unfortunately, he can’t write anymore. In fact, there’s not much he can do for himself. He kept the newspaper up after he went blind, but now he’s pretty deaf as well. Still, he has a wonderful spirit about him.”
“How long has he been here?” Paul inquired.
“Since 1930, you know, the bad old days, when people with Hansen’s disease (leprosy) came for life. Of course, Stanley isn’t his real name, either. He changed that the day he arrived so that he wouldn’t cast shame on his family.”
Paul sighed. Whether in India, Ethiopia, or the United States, the story of leprosy was always one of shame and isolation.
Later that day, Paul made his way to Stanley’s small room. Stanley was sitting in a chair by his bed, and Paul could immediately see the scar tissue on his hands and feet from years of constant injury resulting from his lack of feeling. Although Stanley could not see Paul because of his blindness, the two men were able to communicate if Paul got close to him and talked directly into Stanley’s hearing aid. Paul found Stanley to be a warm and generous person with a sharp mind and a great wit. Stanley told Paul all sorts of stories about Carville’s past and inquired of Paul about all the latest medical breakthroughs in the treatment of leprosy, which at Carville was called by its new name, Hansen’s disease.
Paul was grateful that things were changing fast for leprosy patients. With proper care and regular checkups there was no reason for any leprosy patient to go blind or lose the use of his or her hands and feet. It was the beginning of a new era in the treatment of Hansen’s disease, but for Stanley Stein many of these breakthroughs had come too late. Stanley’s hearing was failing fast, and he was slowly losing the ability to know whether anyone was even in the room with him. Before long his keen mind would be trapped in a body that offered it no sensorial feedback. Leprosy had robbed Stanley of the ability to feel anything through his skin on over 90 percent of his body. His mind would be alive but totally cut off from the rest of the world. Within a short time of Paul’s arrival at Carville, that is indeed what happened. It was heartbreaking for Paul to watch and realize there was nothing more he or anyone else could do for Stanley, who died in 1967, lost inside his own silent world.
Paul found it difficult to accept the level of prejudice that until recently had existed against leprosy patients in such a modern country. Yet after their move to Carville, the Brand family came face-to-face with another kind of prejudice: racism. While living in India, Indians surrounded the Brands; they had filled every function in society. The children had Indian nannies, and the family had an Indian cook and housekeeper. Indians also worked alongside Paul and Margaret at the hospital and medical college as colleagues and often as their supervisors. The whole family, and most of the faculty at Vellore, did not think of the color of a person’s skin as a factor in how they related to the person. Not so in the Deep South of the United States in 1966. The Civil Rights Act had been passed by Congress in 1964, which banned discrimination based on race, color, religion, or national origin in employment practices and public accommodations; and the Voting Rights Act had been passed in 1965 to outlaw discriminatory voting practices that disenfranchised African Americans. Martin Luther King Jr. continued to push for complete equality between blacks and whites. Yet racism in the South remained an enormous problem. While Hansen’s disease was a great leveler of people, outside the confines of the leprosarium at Carville, things were different. Paul was shocked to learn that when he went out the front gate of the institution, turned left, and walked a few hundred yards, he was in one of the poorest rural black communities in the South. The town of Carville consisted of rundown shacks without electricity or running water. Any poor person in India would have felt right at home in one of them.
The two youngest Brands, Patricia and Pauline, bore the brunt of the social upheaval. They were enrolled in public school. However, in Louisiana, public schools were still segregated. The bus would pick the girls up each morning at the leprosarium gate and take them to the all white school in St. Gabriel, the next town from Carville. Meanwhile, the black children from the town of Carville were taken to Sunshine School in the next town beyond St. Gabriel. After the schools were desegregated, Patricia and Pauline had to endure many uncomfortable situations as black and white students learned to accept each other’s presence and get along. Paul was concerned for his daughters at school as they dealt with the upheaval of desegregation, but he had faith that they would work things out for themselves. Meanwhile, much work was to be done at the leprosarium in Carville.
The situation regarding Paul’s position at Carville eventually remedied itself. One of the assistant directors at the institution had taken a personal interest in the matter and lobbied the U.S. Public Health Service headquarters in Washington, D.C., to give Carville the benefit of Paul’s specialized surgical abilities. In 1968 Paul was made Director of Surgery while retaining his responsibilities as Director of Rehabilitation. Now Paul was enjoying rehabilitation more than anything else. On the surgery side he mostly acted as a consultant to the staff surgeons and performed difficult surgeries when they came along. Having performed surgeries sometimes morning, noon, and night at Vellore, he liked the easier pace at Carville. Besides, his work on the rehabilitation side was about to get a lot busier.
Paul had met Mary Switzer when he received the Lasker Award in New York City eight years before. Mary had also been a recipient of the award at the same ceremony. She was now the Commissioner of the Department of Vocational Rehabilitation for the Department of Health, Education, and Welfare. When she learned that Paul Brand was working for the U.S. Public Health Service at Carville, she visited him. As she and Paul talked, Mary became very excited about what Paul was trying to achieve at Carville. In fact, she became a staunch ally and, because of her position in Washington, D.C., told Paul, “Whatever you need for your research, just ask.”
Paul knew she meant it. How he would have loved to have heard those words back in Vellore when money for research was in such short supply. He didn’t waste any time in taking Mary up on her offer. He already had his eye on a new piece of technology that he had a hunch could significantly improve the lives of leprosy patients.
Soon a forty-thousand dollar thermography machine was installed in Paul’s clinic at Carville. The machine was able to measure the variance in temperature in a patient’s hands and feet. While in India, Paul had taught himself by just using his hand to tell whether a patient had a patch of skin where the temperature was higher than the surrounding tissue. This was important because an increase in temperature showed areas of stress and possible tissue damage long before it broke through the skin and became visible to the naked eye.
The thermography machine was accurate at detecting as little as a quarter of a degree temperature difference. The machine presented a thermograph of the hand or foot on a screen, and a hard copy could be printed that showed pictorial temperature differentials. The cool areas of the skin would show up as green or blue, with warmer areas ascending through violet, orange, red, and yellow, and the hottest areas would show up as white.
