Journey to Paradise Lost

This past year, Immaculata B.S.N. alumna Maureen Beail-Farkas, R.N., ’04 worked in a closed community on a remote Hawaiian island with people who had developed Hansen’s disease, the disease formerly called “leprosy.” This story is an excerpt account of her three-month assignment working with the nine remaining patients.

I was in Hawaii on vacation in 2015 when I met another nurse [Paula] in a restaurant in Honolulu. Upon learning that we shared the same occupation, we started comparing work experiences. Paula’s story was incredible. She told me that she worked in a Hansen’s settlement on the remote island of Molokai. She explained that the disease was formerly called “leprosy,” but the name had been changed to Hansen’s disease because of the stigma and pain the words “leper” and “leprosy” still caused the former patients. She described her job as “part in-patient, part out-patient, part home-care, part clinic”…and they needed nurses. With experience in all of those nursing fields and with a wandering spirit, a year later I became one of their nurses.

During my phone interview I was asked, several times, how I felt about being confined and having limited outside contact. I was told that I would not have access to any restaurants, movie theaters, or stores. I was told that the internet and phone weren’t always reliable. I was quizzed on how I would deal with various medical situations and how comfortable I felt with my nursing judgment. The process seemed long and tedious, but suddenly the decision was made and I was expected to start ASAP. In addition to me, there were four other nurses working at the settlement during my time there.

The first thing I saw after getting off the eight-passenger plane in Kalaupapa was a wire fence and a sign: “No entry beyond this point without a visitor permit. Violators are subject to arrest.”

As we drove, Paula told me that the Kalaupapa Settlement is part of a flat, isolated peninsula which is located at the base of the tallest sea cliff in the world (1,700 feet) with the Pacific Ocean on the three remaining sides. The shoreline is rocky and the surf is treacherous. The area was chosen as a place to exile patients because it was, and still is, remote and inaccessible. Being uprooted from their homes and sent to Kalaupapa was viewed as a death sentence because it was the place where more than 8,000 people were sent to die.
My first day in the settlement was an emotional day for everyone.

It was the day of a beloved patient’s funeral. I watched as people put their homemade leis into his coffin. I watched as his coffin was loaded into the back of his pickup truck. I was told everyone would be going to the funeral. I volunteered to stay and work at the hospital. I was given a walkie-talkie and told that staff would be available if I had any problems or questions. As the only person in the hospital, I took my walkie-talkie and walked around—giving myself my new employee orientation. The hospital had previously been a fully-functional medical facility with many patients—now some of the units are closed and it is a five-bed unit. While I was there, I worked full-time, eight-hour days on a rotating basis and was often asked to arrive early or stay late. My life, for obvious reasons, was dictated by my work schedule.

On my next day at the hospital, I met the solitary hospitalized patient. I met other patients throughout the day as they came from their homes to have vital signs monitored, receive daily medications and/or have other nursing procedures performed. Before the shift change I drove the Hawaii Department of Health van to the home of two other patients to provide their nursing care.

In the 1950s, sulfa drugs were discovered to cure Hansen’s disease although many of the patients had been disfigured by the disease before the cure became available. Today there are no active cases of Hansen’s disease at Kalaupapa Settlement, the patients have various medical conditions. But, in general, they appeared much healthier than I was expecting. Now they were cured patients and no longer subjected to the humiliating and painful ordeal of standing, almost naked, in front of a group of doctors while their skin was poked, probed and sliced on a regular basis.

However, forms of isolation still existed. Although they were now free to leave Molokai, because of their disfigurement they still faced discrimination and felt ostracized and feared by the public. They were allowed to travel, but they were sometimes refused entry into stores. They were stared at and still treated as though they were contagious and dirty. Partially because of this treatment, many of the now “former patients” elected to remain in the settlement where they had been exiled and were forced to create lives for themselves.

With only nine remaining patients, all in their 70s, 80s, and 90s, one day there will be no surviving patients who had been sent to Kalaupapa to die. Nurses working at Kalaupapa need a bachelor’s degree, so by completing my B.S.N. at Immaculata, I had the educational foundation which was my first step towards working at the settlement.

When I arrived back from Molokai, I understood, in a small way, what many of the patients at the settlement had experienced all their lives. Knowing that I had just returned from a leprosy colony, many people actually backed away from me…as if I were contagious.

I am astonished that such a short experience will have such a profound and lasting effect on me. I had to quit a nursing job that I loved, but I have no regrets. Although the pay was low, I got more than I gave.

History of Leprosy/Hansen’s Disease

Leprosy is a chronic infectious disease caused by Mycobacterium leprae, an acid-fast, rod-shaped bacillus. The disease mainly affects the skin, the peripheral nerves, mucosa of the upper respiratory tract, and the eyes.

For centuries, leprosy had no cure, and people with the disease were feared and shunned. During the Middle Ages, leprosy patients had to ring bells to warn people they were coming and they were required to walk on the opposite side of the street, depending on the direction of the wind.

In 1837, Dr. Gerhard Henrik Armauer Hansen discovered the germ that causes leprosy. The discovery of mycobacterium leprae proved that leprosy was neither hereditary nor a curse. In 1941, Promin, a sulfone drug, was being administered to leprosy patients all over the world and by the 1950s, Dapsone pills became the treatment of choice. Today, a multidrug therapy has proven effective.

Even after the discovery of the germ, leprosy patients were stigmatized and discriminated against. Leprosy patients were treated in separate hospitals and were taken to live-in colonies, including Kalaupapa.

In 2015, the World Health Organization’s official numbers of leprosy patients were 176,176 cases from 138 countries. During that same year, 211,973 new cases were diagnosed and reported.

Author: aduncan

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