The Edge of the Circle
This afternoon, huddled under the shade of a giant neem tree, women gathered for a dress ceremony. In the fistula world, dress ceremonies are held to honor women whose fistulas have been successfully closed. Women who are dry. Songs about fistula are sung, the doctors are praised. Women are given a new outfit to replace the one or two skirts the women posses, worn to rags from the acidic ever-presence of urine.
Today, there were only four women participating. It was small and without much to-do. The dancing didn’t last long. The speeches were short. That said, it was lovely. Four women able to go home, back to their lives.
But then, I glance at the other women sitting outside the circle, women of the same cohort – women whose surgeries had failed. Whose pagnes (skirt cloths) are soaked through, who dispassionately mumble maxims like “sai Allah ya ba da lahiya” “only God gives health”. I feel torn about celebrating surgical successes in such a public way when for so many women surgery fails. And for many, it fails again, and again.
When I arrived at Danja, I was surprised to see Ra’ha. Ra’ha was here for surgery when I did my preliminary research a year and a half ago. Then, it was her 9th surgery. She’s spent the last 22 years with fistula, traveling throughout the country (and in neighboring countries) looking for surgical success – looking for continence. Apparently, she still hadn’t found it. “What are you doing here?” I asked. She laughed and pointed in the corner of the small room she shares with her daughter and 5 other women to two overflowing cement bags – all of their things. “We live here now. I sweep, I wash dishes. There is nothing more they can do.” Ra’ha is Danja’s first official “incurable” – a sector of the population that you don’t hear much about. Debates rage in the fistula world on what to do with them. Do you try to hire as many as possible and keep them at the hospital? Do you send them home? Or, as they did in Ethiopia, establish a colony of incurables? They counter the narrative of the miraculous surgical repair – the ‘relatively simple’ fix. Indeed, most women here have had several surgeries already. And with each surgery, the chances for success wanes. Scar tissue builds up. Their tissues lose elasticity, I’m told.
So, then the conversation shifts from cure to management. “How do you live with this?” “How do you hide it?” I ask. Indeed, some women tell me the elaborate strategies they’ve tweaked over the years to conceal their leaks. Some women even manage to hide it from their husbands. One woman told me that she’d gone two years without him discovering her condition. How? She shrugged. “He wasn’t very curious I suppose”. Some women invent creative solutions mixing plastics and cloth – strategies which they then share with one another at the center. After it got around that I was interested in learning about management strategies, women began conspiratorially showing me their vinyl sleeping mats, how they fold leak-proof diapers – after the giggles of embarrassment and shame, women betray a sliver of pride in their ingenuity. One woman shows me the plastic plug that she will have to use for the rest of her life.
I leave the dress ceremony, squeezing the hands of the women on the edges of the circle, feeling contrived when I say to them what they’ve told me so many times:
sai hankuri.
have patience.
