Sai Hankuri

The Other Extreme

Over the past decade, obstetric fistula has been effectively branded as a profoundly stigmatizing illness, usually conjuring images of young girls forced into early marriages, “backwards” cultural and religious practices, and victimization by African men (see last post). Indeed, fistula has become symbolic of the physical consequences of harmful culture on the quintessentially innocent. However, my experiences in the field contradict (or maybe just complicate) this narrative. Indeed, as I parse through story after story of Nigerien women seeking treatment for obstetric fistula, neither archetypical sufferers nor archetypical stories of suffering emerge. Women’s stories are as diverse as they are – they are young and they are old, they are rejected and they are embraced, they are forced by parents to marry before menarche and it is they who choose when to marry the men they love.

Still, the discourse surrounding obstetric fistula presents one single picture – one single woman. And she’s just a girl really. One by one, she’s abandoned by her husband, then her community, then her family, until she’s alone. She’s ridiculed. She’s poor. She’s hungry. She is enshrouded by the indelible odor of urine or feces. And yet, out of the 52 women with fistula whom I’ve interviewed, and the dozens more with whom I’ve informally chatted, I can count on one hand the few who fit this bill. The archetypical fistula suffer – young, abandoned, and crippled by shame – exists. She’s just at the far end of a multidimensional spectrum.

And this week I met a woman who deviates from the norm as much as these abject few.
But she’s the other extreme.

I met Aissa at one of the four fistula treatment centers where I work in Niger. Just two weeks ago Aissa’s catheter was removed, and as she whispered over and over “Alhamdulillah”, praise to God, not a drop of urine fell. After a yearlong search for continence, Aissa arrived.

Aissa was married at 20 years old to the man of her choosing. “Soyayya muke”, it was mutual love between us, she told me. He’s her first cousin, and rather than bring her problems as auren gida, or intra-family marriage, does for many other women in the face of reproductive complications, she explained to me that because he is her family, and her mother-in-law is her aunt, they have no choice but support her, love her, and have patience until God sees her through. And they have. She says that through her sickness, her husband never said a bad word towards her, he refused her nothing, he never took another wife, and he waited patiently during a year of abstinence while she lived with a catheter.

She contracted fistula during her fourth pregnancy. At a prenatal consultation she was told that her child had a deformation, an enlarged head which could make a natural birth difficult if not impossible. As soon as her labor began, her husband rented a taxi (with money he’d saved up since he heard the news of potential complications). By the time she arrived at a health center, she had birthed the hands and feet of her child, but as expected, she was unable to birth its head. The nurse reported that the child had already died, but because the center was not equipped to perform Cesarean Sections, he pulled with extreme force to extract the body.

Soon after, urine began dripping down her legs, but because she’d never heard of any sickness that rendered a woman incontinent, she went home and tried to wait it out. Eventually, through a long and convoluted chain of referrals and misdiagnoses, she arrived at a fistula center. Due to a long backlog for surgeries, and political tensions which make fistula repair surgery unattainable for many women, the center opted to try an older technique – inserting a catheter for a prolonged period of time, hoping that the respite of urine leaking on the raw tissue in the vagina would allow the hole to heal on its own.

Aissa lived with the catheter, which connected to a small bag to collect her urine, for eight months. Because she lived close to the center, she spent most of those eight months at home with her family, returning to the center once a week for a check-up. She told me that while the catheter was physically uncomfortable, and while she worried that it wouldn’t fix her fistula, she never experienced any mistreatment from anyone. No one refused to eat the food she prepared. No one called her names. No one spit when she passed. Life went on.

You will see, she said. “Come home with me, and you will see. My family will be there waiting. They will say ‘Aissa is home! Thank God, Aissa is back!’.” Curious, and wondering if perhaps she was withholding experiences of mistreatment, I took up her offer (which may have been more for rhetorical purposes than an actual invitation, but such awkward impositions are standard – and arguably necessary – for anthropological fieldwork….).

When we passed through the mud archway of her home, pushing aside the woven grass mat that acted as a door, her sister ran to us. Her twelve-year old daughter flung her arms around Aissa’s waist. They ushered us into a small room with mats on the floor – the only room of the house. Her husband came in grinning. Her four-month-old niece was placed in her arms. Her father, who reclined in the shade, beckoned us. I spent the afternoon sitting with her family – listening in as they joked, laughed, gossiped, and told stories and parables.

Even if beyond this placid afternoon, Aissa’s neighbors do gossip about her condition, or her friendships do suffer (realities which I will try to uncover over the coming months), the truth remains that Aissa’s experiences of fistula are equal parts suffering and frustration as social support and compassion. And indeed, if we accept only one fistula narrative, denying that for some, illness doesn’t disintegrate social networks, rather it reinforces them, then we cannot understand what makes Aissa different from women all the way at the other end of the spectrum. Can it all be boiled down to luck, or is there some confluence of factors (age? parity? ethnic group? severity of fistula? conjugal dynamics?) that predictably determine where on this spectrum a certain woman will fall?

Without understanding exactly why some women are unlucky enough to find themselves rejected and mistreated in the face of fistula, while others find themselves embraced and cared for, it is important to remember that most women find themselves somewhere in the middle.

So, if we begin to look at the middle of the spectrum for a new fistula narrative, what is it? What ties these women together? Seeking care in a world of disparities and structural inequalities, feeling the shame and frustration that comes from adult incontinence? And what can anthropologists pass on to clinicians to encourage more experiences like Aissas and fewer from the other extreme?