Moloka'i
My Early fascination With Leprosy
I've been interested in leprosy since I was a little girl and heard about it -- I have a vivid memory of the lepers in the movie Ben Hur being healed by Jesus -- I remember watching it on TV and asking my dad what was wrong with them. I saw movies about Father Damian, a priest who went to Moloka'i to care for the lepers (and convert them), who got leprosy as well.
There is also an interesting depiction of the period of time -- 1890's to early 1900's -- at the beginning of this novel in the movie The Hawaiians, with Charlton Heston. Based on the novel by James Michener, The Hawaiians is about the descendents of the characters in the movie Hawaii.
In The Hawaiians, the great Japanese actor, Mako, portrays Mun Ki -- a Chinese immigrant to Hawaii who ends up fathering many sons with another immigrant, played by actress Tina Chen, even though he has a wife and family he is sending money to in China. When Mun Ki gets leprosy, his "wife" hides his condition as long as possible. When the leprosy inspectors find out about Mun Ki, she goes with him, to care for him, to Moloka'i. She is permanently exiled there with him, and ironically, never contracts leprosy herself -- some people are inherently immune.
My fascination with leprosy is two-fold. One source is my own skin disorder, a genetically caused condition called epidermolytic hyperkeratosis (EHK). EHK causes the body to produce skin cells faster than normal, and the cells don't break down properly, so there is considerable flaking and callousing, and blistering when friction occurs -- such as the friction caused by walking. Put simply, it is different looking and scary looking to some people.
When I heard about leprosy as a young girl, I was intrigued by the idea of being someplace where everyone else had the same disease; they wouldn't be scared of each other, would they? I didn't meet anyone else with EHK until I was 35.
I was also intrigued by the fact that leprosy doesn't hurt -- in fact that is a huge part of the problem. Nerve damage causes numbness, and burns and injuries can occur without the person with leprosy being aware of it. Discomfort is a big issue with my disability; its "otherness", like leprosy, is in the appearance, but it also can hurt. How would I feel if my disability didn't hurt, and I only had the social issues with which to contend.
The NovelThe main character of Moloka'i, Rachel Kalema, is a young girl at the beginning of the book, which also helped to draw me in. When she is diagnosed with leprosy, she is taken away from her family and exiled to Moloka'i, where she spends most of her life.
The novel covers the entire arch of the treatment of leprosy and leprosy patients from the 1890's to the 1960's. Leprosy becomes the less stigmatizing "Hansen's Disease". In the 1940's, drug therapy is developed that causes the leprosy to go into remission; it also renders it not communicable, if the patients continue their medication.
The novel, like any book about a small community where the members are thrown together involuntarily -- novels about the Holocaust and about the internment of the Japanese during WWII come to mind -- is a study in human nature as well. How different people react to similarly horrendous circumstances; for some, it brings out the best in them, for others, the worst.
I highly recommend this novel.