Holding Hands with Lepers

©Vince Ng

Leprosy seems to be one of the oldest (or if not, most infamous) of diseases in human history. Yet, the closest a Canadian has, or probably ever will, come to the disease is through movies like Ben Hur. After the chariot race scene, Ben Hur makes his way to Jerusalem’s leper colony in search of his mother and sister in order to bring them to find Jesus. In the movie, lepers are portrayed as zombie-like, living a pitiful existence in caves and shut off from society. Unfortunately, leprosy is still alive and common in Nepal due to unsanitary living conditions found in some villages, and there exists discrimination of certain castes and stigmatization, instead of understanding for infected individuals.

I had come alone to collect data and write a report for the medical NGO I was working with and ended up in Anandaban, about one hour and a half north of Kathmandu by bus. My previous post in the remote region of Rukum had allowed me to witness a few cases of leprosy first hand. In most of these cases, we cleaned and removed parts of the infected flesh but could not do anything beyond that simple treatment. In contrast, Anandaban Leprosy Hospital was a shock, as it was a state of the art facility designed specifically to treat the disease.

The hospital was located on top of a hill in the quiet forest area away from the bustle of Kathmandu. It was much larger, well kept and cleaner than some of the other hospitals I had worked at. Even though the buildings had about 3 floors on average, each level had ramp access for the patients. When I arrived for the first time, a beautiful woman was sitting on the stairs playing with her baby. I exchanged a few words with her and asked her for directions to the main ward. Staff later told me that she, herself, was a leprosy patient.

The stereotype of lepers conjures up images of claw-limbed people with strange statue-like facial expressions, missing fingers or limbs. Until modern times, many people believed this disease was the product of divine punishment, since it tended to predominantly affect lower caste people. In fact leprosy is caused by a bacterium called Mycobacterium Leprae. The incubation period for Mycobacterium Leprae is roughly two years, before it starts to develop and multiply at which point it begins to affect human tissue and cause nerve damage. As the bacteria’s ideal breeding environment is slightly below the average body temperature of 37 degrees, limbs and appendages are usually the first to be affected. Sensation of the nose and testis are generally reduced and the function of fingers and legs are lost. Effective treatment is cheap, painless and prevents damage from occurring to a patient’s appearance if the disease discovered at an early stage. The problem with the remoteness of Nepal is that most lepers find out too late that they are infected and are afraid to show their symptoms, especially when they are women.

Discrimination against lepers may involve being confined against their will, banishment from a home village, loss of work, or divorce (prevalent among female patients). However, at Anandaban, lepers had a strong degree of freedom as only medical staff and other lepers were the only other people around. Everyday the patients underwent rehabilitation training where experts would sit down at a table with them and help them stretch their muscles. Simple exercises involving stacking blocks and walking with artificial limbs were practiced to give patients improved function in their affected body parts.

In the operating theatre, new patients could be inspected and in many cases partial or full amputations occurred in order to remove the dead parts of the body or to stop further spread of infection. The doctors and medics were all very well trained and had years of experience. A claw foot (which resembles a curled eagle’s talon) could be reshaped to look like a normal foot through insertion of spikes into the foot with a power drill which was then molded with a metal bender. It seemed more like engineering than medicine. Perhaps the operation that made the strongest impression on me involved an old lady who had lost sensation of her eyelids. She could not blink her eyes automatically. The surgeon transplanted a tendon from her wrist to the muscles near the eye area. Through rehabilitation she was taught how to blink using a different set of muscles. After the operation, as her eyes were bandaged, I saw a big smile spread across her face (see the linked photo journal at the end of this blog).

In order to be as self-sustaining as possible the hospital had set up small businesses to provide food for patients. Many of the patients came on charity through foreign donations, while some volunteer medical students and doctors came so they could work or train themselves in leprosy treatment. Some of the patients were even foreigners. Many Indian lepers who could not find such good treatment in their own country walked across the border in order to get proper treatment and support. There were caretakers for the pigs and buffaloes, cooks, janitors and gardeners, all of whom were some of the hospital’s patients and who had extended their stay or did not wish to return to their respective hometowns. In one case, a young male patient met his girlfriend at the hospital. They fell in love, got married, had a daughter and he now works as the hospital’s pig keeper. His wife was also a leper -indeed a rare leper love story.

Down the hill on the far side of the mountain was a village. This was not a normal village, but was a village of lepers. Patients who take months and years to regain control of their limbs can opt to live within a normal Nepali village setting as opposed to a hospital bed. The communal atmosphere built up the patient’s self esteem, and everyone provided their own labour in the fields in order to grow their own food. The villagers were all smiles, and were quick to give me a tour. They were proud of their inventions, which were designed by lepers for lepers. Have you ever tried to make vegetable soup before or plow a field? Could you do these tasks without fingers? Ingenious ideas paired with a small, unified community allowed this village to flourish. For example, traditional Nepali chia cups are always made with aluminum, and are slightly tapered at the bottom. One patient who had lost sensation of half of her fingers and an opposable thumb had difficulty holding this style of cup. However, she had ingeniously crafted a handle which resembled a magnifying glass without its lens. She could place the cup through the hole and hold the wooden handle to drink from the cup. Even I wanted a device like that, as the Nepali chia felt hot against the aluminum and it was always a challenge to hold the cup from its top rim (the only part which didn’t touch the liquid inside). I’m sure the device would sell like crazy in the bazaars.

But back to the movie: Ben Hur, his mother and sister eventually do find Jesus, but are too late. Instead of finding help, they end up as witnesses to his crucifixion. Yet, following the first cleansing rain their disease is washed away. While we all hope for a miracle to instantly reverse the effects of leprosy, the great facilities and human touch of Anandaban may be as close as we get for now. In a country where basic medical care is unavailable to many, having a specialized hospital that even attracts foreign patients and staff is something Nepal should be proud of. Although the stigma associated with leprosy will continue to exist, I hope the discrimination faced by lepers will stop, through the use of preventative healthcare, and more mobile clinics and pills which can be brought down to the village level.

This is the fourth part in a series about my time in Nepal. To view pictures, click here. Click here to read the first, second, and third entries.