Living with Leprosy

The decision to sign up for a month long spiritual retreat in the depths of rural india which involved working with and alongside people who had been affected by leprosy wasn’t really made consciously. It came from a deep knowing that this was somewhere I needed to be. I did a little research about the people running it and the ethos behind it, but I knew very little about leprosy or what I might be doing when I got there.

I had seen people with leprosy on previous visits to India. My memory was of open sores and deformed limbs, hands and feet. Most of them were beggars having been shunned by families who believed leprosy was a result of bad karma or punishment from God.

Sign outside the hospital

Sign outside the hospital

Families and communities that are struggling through a life of poverty and hardship have little spare time or cash to care for someone with a disability. If you can’t pay your way or be productive there is no place for you. Add the social and religious bigotry surrounding leprosy and you have an unsolvable situation which results in ostracism and isolation.

50 years ago there was no treatment for leprosy, a bacteria borne disease. Now it is easily detectable, the early signs being darker patches of skin which are numb, and simply and effectively treatable. A combination of drugs are taken for 6 months to a year depending on how many patches you present with, which indicates how advanced the disease is. Leprosy is not very contagious, but does spread easily, via respiratory droplets, particularly within poverty stricken communities and those with low or impaired immune systems. However, as soon as the first dose of the medication is taken the person is no longer infectious. Though it may now be more easily controlled it still holds the fear and myths that have been around for generations.

The early stages of the disease are easy to hide and if you are lucky and get diagnosed in good time and get the drug regime a cure is guaranteed. If you manage to get to Anandwan you could stay for the duratIon of the treatment  and then return to your family with a story of having worked away with no-one being any the wiser.

Amputee

Amputee

Most people though, about another 1300, had not been as lucky and were managing the long term affects of this debilitating condition. The bacterium affects the nervous system, particularly the peripheral nerves, the skin and eyes. It doesn’t, as folklore states, cause body parts to fall off, but due to numbness, infections and cartilage damage, fingers and toes can become shortened or deformed and sometimes parts of the face, particularly the nose can sink and flatten.

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Everyone had lost either fingers or toes or they were twisted and deformed. A minority had needed amputations. Some of the older inhabitants had hands which looked like paws – flat palms and no fingers, just five blunt and rounded bumps indicating where fingers and thumbs had once been. Even if fingers did remain they were often bent over in a permanent claw like shape, making even simple tasks like buttoning a shirt or tying a saree difficult and laborious. At least with digits you had a bit more ability than those with none. Imagine caring for yourself with only paws for hands when there are no helpful aids like velcro or occupational therapists to offer advice and support. But everyone manages against all the odds. Despite the fact that Indians can be quite rough in their interactions – I was often shoved, pinched or slapped in order to get my attention – they are also very aware of what is happening around them and it is touching to see how they help someone who is less able than they are.

Elder of the community

Elder of the community

About 90% of the inhabitants have a bandage on a foot or hand. Because the nerve damage causes numbness they are very susceptible to injury and wounds. This may be from a simple crack on a dry heal that isn’t seen and gets deeper and wider, it may be a cut they pick up in their work and often it is due to eating something that is too hot or simply holding a cup of chai that burns their skin. If they are lucky and catch it early it may heal in a week or two. If it goes undetected or is a more extensive wound in the first place it may take months to heal. I was deeply touched by a young man in his mid-twenties who came to the hospital to have a foot wound dressed. He was handsome, fit, intelligent and to all intents and purposes a man with opportunities and a full life ahead of him. Although he was cured of leprosy and his limbs and digits were as yet unaffected he did have a deep wound on the sole of his right foot. This one would heal in time, but undoubtedly he would get another and then another. May be one time the infection would claim a toe or a part of his foot, may be not. Either way his future would always be affected by leprosy and would probably be limited by it.

Himraj was the main man in the hospital when it came to wound dressing. It was fascinating watching him.

Himraj and the dressing trolley

Himraj and the dressing trolley

Generally he would sit at one end of the ward and the patients would assemble in a higgedly piggedly fashion, calm and resigned, waiting their turn. Some would perch on a nearby bed, others would shuffle up and down or wait on the veranda in the sun until they got their place, presenting their foot or hand to the wound dressing master. Himraj, who had had leprosy himself, had no medical background but was trained to do the dressings over 20 years ago. Oh my, it was a bit different to the way I used to do it! I used to love the ritual of putting on an apron and getting the dressing trolley arranged with the sterile covers, the sterile swabs and saline for cleaning, a fresh pair of gloves and the range of lotions, potions and dressings I may use; all the paraphernalia. Then to work cleaning and drying and applying and throughout the whole procedure ensuring I adhered to a strict asceptic technique. Very satisfying! Himraj, for all his experience and technique has little concept of an asceptic technique! There was no wasting time washing his hands between patients, no change of implements, nor washing or sterilising them as one grubby foot or hand followed another. Everything he used was on one trolley so dirty scissors touched clean cotton wool, a bandage that dropped to the floor was popped back on the pile. Many of the wounds were cleaned with hydrogen peroxide which fizzed and bubbled on the skin, very alarming to watch, and then washed away with some wet cotton wool. The choice of dressings were some liniment or a dark mix of betadine that was smeared on to a dry swab and applied to the wound – that was it. None of the choice we get at home. Another swab was placed over the dressing for some cushioning followed by a fraying bandage. He was an expert at bandaging. I stood in awe of his prowess. Bandaging fingers and toes that were heading off in various angles or hardly existed at all was a skill and he was a master artist.

He was kind and patient enough to allow me to “help” on a few a occasions. I had to let go of my prissy Western ways and get down to it Indian style. I have to say I enjoyed it! He had to intervene at times to help with securing a bandage on a tricky area and I always stepped aside when a bit of pairing was required.

Skill with the scalpel

Skill with the scalpel

Sometimes he had to cut away dry, thickened or at worst infected and spongy skin from around a wound and he did this with a scalpel. Not for the faint hearted or the unskilled – the numbness that often contributed to the formation of these wounds, now was a blessing. He calmly cut and shaved until he was satisfied, all the time softly humming to himself. Though I had many misgivings about the way things were done, all the wounds I saw that were being dressed and treated were healthy and healing, even if this was a very slow process.

Dressings were also needed for people who weren’t hospitalised. There was a daily clinic which catered for most of the community and this opened at 5.30am to allow workers to get their dressings done before they headed off to their labours.

Wound dressing clinic

Wound dressing clinic

The other place was in the home for the elderly. I spent a morning with Kamal who did the dressings for the elderly women. I first met Kamal when she was admitted for a few days at the hospital with an infected toe and needed antibiotics and rest. When she returned to work I went to help her out. Again we had very little equipment and I went round from bed to bed with a metal tray full of my dressing goodies. There were sore fingers, infected feet, bed sores and more. She kept a fairly beady eye on me and tutted when she thought I was being to soft or slow or pedantic. She on the other hand was very blasé. She’d help me by cutting the damp liniment dressing and if I wasn’t ready for it she’d drop it on the floor – when I exclaimed and indicated I couldn’t use it she picked it up and put it on the wound herself! Kamal also used a scalpel to pair skin. This was not easy for her as she had many foreshortened and stumpy fingers and twice she dropped the blade in to the bowl beneath the foot she was working on. This bowl had all the dirty dressings in it, but she was undeterred and would simply fish it out and continue. My horror just received a tut and then a wide grin when she’d finished, as if to say “so there!”

Aside from the occasional foray in to wound dressing the majority of my time in the hospital was spent massaging and clipping nails. Though I first judged these simple offerings to be inadequate I came to realise they were deeply appreciated and valued. Clipping nails is hard if you can’t easily hold and manipulate scissors or clippers and I came across some extraordinary nail formations; curled, jagged, brittle, tough and sometimes hoof like. It was a dangerous business with sharp clippings flying too close to my face for comfort and heaven only knows what the dirt was beneath those nails … I didn’t follow that line of thought too closely! However, hands and feet were proffered and it was an easy way to make friends!

Massage too was sure to procure a firm connection. For some I think they simply appreciated being oiled. Their skin was so dry giving a grey hue on their chocolate coloured skin or appearing like a muddy field baked dry in the sun. Folds of aged old skin, some leather hard some loose and papery. They were candid and easy in their bodies, unwinding sarees, pulling up a trouser leg, pulling off layers of shabby, threadbare jumpers and greying shirts to give me access to the pain, the tension, the dryness.

I longed to know their stories. With my limited Hindi I could find out whether they were married, where they lived, if they had children. But I wanted to know how they lived, what they did, how they filled their days, if their marriages were happy, what were their dreams? But none of this was possible and I had to be content with the sacred, if public, ceremony of one human being touching another. Allowing their stories to be told through their bodies, their breath, their facial expressions. I could feel their tiredness or energy, the strong muscles from hard physical work and little comfort, the tight and sore muscles of a life lived in a disabled and imbalanced body. Sometimes these muscles began to soften, to let go, as I sat comfortably and non-judgementally, touching body parts that may have been found to be ugly, shaming and unacceptable by others. I offered my compassion and quietly honoured all that these ravaged bodies and indomitable spirits had overcome.

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That snap decision I made all those months ago to follow my heart and intuition was made at a time when I was doing a lot of spiritual enquiry and meditating; working with people who were living with challenges and sharing their magnificent spirits with me. Then many months and thousands of miles later I find myself in a vastly different environment, but basically doing exactly the same thing! Realising how closely connected and interrelated we all are. Perhaps all just wanting the same thing, to be healed, accepted and loved.

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