Tuesday, January 8, 2008

The Ossiomo Project

Until last week, my knowledge of leprosy was limited to what I learned in Sunday School, namely:

1. Leprosy is a horrible disease that causes limbs to fall off; and

2. Jesus touched the lepers and turned them into wine.

Hmmm. Maybe I should have paid closer attention in class. In any event, my point is that I’ve always considered leprosy to be a disease of the ancients, mentioned in the same breath as pharaohs and plagues of frogs. Like the Black Death, its place was in the history books – its only relevance today to make us happy we didn’t live Back Then.

Of course, there was no reason for me to assume leprosy had been eradicated, except for its lack of coverage in the mainstream media. (Now, that’s a painful admission to make.) For me, a disease is relegated to the dark recesses of my faulty memory unless it receives press. Modern epidemics like HIV/AIDS command the bulk of medical headlines today and rightly so, killing people as they do in numbers not seen since the bad old days. But unlike faded celebrities, diseases rarely exist as has-beens, and a failure to make the news does not translate into a cure.

So, with my ignorance of leprosy now firmly established, it should come as no surprise to anyone reading this that I was ill-prepared to meet up with a community of ex-leprosy patients. Yes, you read that right. Ex-leprosy patients. A cure for leprosy has been in existence since the 1950’s, and if caught in its early stages, it can be eliminated without the patient suffering the awful losses commonly associated with the disease. But not all people are lucky enough to benefit from such early intervention and the crippling effects still result. For those in developing countries such as Nigeria, the loss of fingers, toes or eyesight can effectively end the working life of someone who depends on manual labour for his or her livelihood. Equally debilitating is the stigmatization from one’s own community due to fear borne of ignorance of the disease. The shame is that the transmission of the disease now understood, so exile is no longer needed.

As inexcusable as ostracism is as a solution today to protect a community, it’s easy to understand the basis of people’s fear. I wish I could shake a finger at people who still shun those afflicted with the disease, but the truth is that I didn’t know myself how leprosy is spread, so I admit to a certain amount of apprehension at the prospect of visiting a community of ex-leprosy patients. Of course, the fact that they were EX-leprosy patients should have been enough to calm my nerves, but I always have been lousy at reading the specifics.

The invitation to visit came from Mart and Elly, a husband and wife team of VSO volunteers from Holland, who had set themselves up in Ossiomo in the southern part of Nigeria last year. The trip to Ossiomo from my adopted hometown of Kagoro is a thirteen-hour odyssey worthy of its own blog entry. For now, suffice to say that the journey does not lend itself to a weekend excursion. But with two weeks of Christmas vacation providing a significant break in our schedules, my friend Kristel and I hit the highway and headed South.

After an evening spent soothing our road-weary nerves with Guilder beer and red wine in the comfort of Mart and Elly’s home, we set out the next day to explore the project. Officially known as the Patient Rehabilitation Project (or PRP for short), the Ossiomo project developed as a way for patients to generate income for themselves. Having worked on a similar assignment in northern Nigeria, Mart and Elly took on the task of working with the local community to get the present project underway in Ossiomo. Essentially, the PRP consists of producing bed sheets, table cloths, T-shirts and wall decorations that are then dyed and screen printed by the patients and their family members. The participants are involved at all stages of the process, from the purchase of the cloth and sewing of the products to the design creations and ultimate sale to the buyers. Money earned from the sales is used in turn to buy more materials, and any remaining profit is shared among the patients according to their efforts. The hope is to have the participants running the entire operation themselves by the time Mart and Elly leave in the Fall of this year.

Acting as our guide for the morning, Elly first showed us the Rehabilitation Centre of the Daughters of Charity where the project is housed. The Centre itself is quite comprehensive, with a number of different wards, a pair of surgical theatres and a physiotherapy room. Saving her pride and joy for the last, Elly then led us through the PRP rooms. The quiet of the rooms stood in contrast to their usual level of activity, as the participants were also off enjoying their Christmas holidays. The bustle of full operation would have been great to witness. Instead, we were treated to a display of the products produced, and the designs were as impressive as promised. Lizards, turtles, and snakes, oh my! From the simple animal prints to the elaborate abstract borders, the T-shirts and bedsheets were bold and eye-catching, with bright background colours offsetting the black designs. We lingered in the display shop for some time before moving on to our final stop, the home for elderly ex-leprosy patients.

If it’s possible for a place to be both heartbreaking and uplifting, this was it. As long-time survivors of leprosy, the fourteen men and eight women housed in the two buildings have experienced the worst effects of the disease, with many losing limbs, eyesight or both. But as we approached the men’s building, the mood was anything but sad. The sound of Afrobeat music greeted us, as though a celebration was in full swing. We met the first resident on the front porch, and he leapt up from his seat and insisted on making his way to his bed so that we could greet him again there, his memory replacing his sight as his guide as we moved inside.

As we walked from bed to bed, each man greeted us enthusiastically, though most could no longer see us. Holding out hands scarred and battered, they received our handshakes with pleasure as they wished us a Happy New Year and asked us questions about where we were from. One man seemed likely to be the exception, as the pain in his leg caused him to shudder and hunch over the side of his bed. Elly greeted him on her own first and spent some time with him before introducing Kristel and me. As though a switch were flicked, he lit up brightly and warmly welcomed us, the pain being momentarily shoved aside in favour of being a good host. We spent some time joking with him before saying our goodbyes to everyone and making our way to the women’s home.

On the front porch of that building, we met two of the residents. The first, Vero, short for Veronique, was an unapologetic flirt. When she heard my voice, she turned her head toward me and asked, “Are you a man?” I replied in my best masculine voice and she asked, “Are you married?”, followed by a gale of laughter. She also wanted to know what I brought her from Canada and seemed to think that my answer of “a smile” was as lame as it sounded. The women inside greeted us as happily as the men, and Elly circled the room with the same great bedside manner as before. We left the room to repeated calls of “Happy New Year!” and said our goodbyes to Vero, laughing with her as she claimed Elly’s husband as her own.


Anonymous said...

I think Vero was not the only flirt there, Glenn!

Thank you for your updates. Faeron will be thrilled to see her artwork gracing your wall. We enjoyed your lyrics and photographs very much.

Chris envies your sparse surroundings (I am re-organizing which means pulling out everything in our grossly overstocked home and donating those things we are not using...which means boxes piled around until the truck comes...)

Your photos put things in perspective!

We miss you, Glenn.


Paul J said...

Thanks for your honest and accurate description of your experience. The HD (Hansen's Disease) community needs all of the advocates it can find! (Paul Johansen / www.IguanaPhoto.com)