Mateus had seizures every day of his life. They were bad, and due to his preference for wandering around town, they were often in public places. Naturally, our other neighbors decided that he was possessed (by demons) and each time he had a seizure near people, they would beat him/the demons.
The first time I met Mateus, he had come to my house to ask for a knife. Because I didn't know Portuguese very well at this point, I was very confused, even more so when a neighbor came out of her house and started doing the finger-circling close the the temple sign for "crazy." Since I didn't understand him, nor did I want to hand over a knife to a child who may or may not have been mentally stable, I apologetically set him away.
My neighbor then ran up: "Mana Ana, he's crazy. That's what I was trying to tell you. He shouldn't be at your house." Okay, I thought. But he's just a kid. What's the deal?
I saw him around more after that and always said hello to him, noticing that others rarely did the same. As my friendships grew, I asked people I began to trust about his situation. They explained: He has seizures and doesn't play with the other kids. No one knew how old he was.
When I asked him how he was, he would always give me a discombobulated answer about someone beating him, usually to my understanding, his family. I always saw him wandering around at night, smelling strongly of pee, adding more to the image I had of the neglected/abused child.
The next step in the investigation was to talk to the nuns, who, although removed from the fofoca train (gossip), would probably have some idea. The nun who worked at the health post explained to me that his father was gone, his mother had died from AIDS, and he lived with his great aunt. I asked if he was HIV positive, thinking that if he were, we may be able to send him to live in a group home for HIV positive AIDS orphans (there are a few of those in Mozambique). This nun, to whom I will forever be grateful, took him for an HIV test. He was HIV negative.
I spoke to other friends, and was directed in a very indirect way to the social services director in Gurue. I explained the situation, and he immediately sent someone to the family with clothing detergent, rice, soap, and other basics. Throughout the next year, I worked with him to try to find a place we could send him to get better. No one would take him with untreated epilepsy.
About 10 months into that year, completely discouraged and very disillusioned with the pace of social services in Mozambique, my tea field confidante asked me a very pointed question. Would he be better off somewhere else?
As I began to actually look at the situation after having lived there long enough to understand things I hadn't before, I began to see that the entire village took care of him. They gave Mateus food, juice, bread, and sometimes coins. When it was dark, they told him to go home. So maybe it shouldn't be so automatic to take him out of where he knows. His family would have no resources to care for him anywhere but the village, and I hadn't even met the majority of his extended family.
As I was leaving, I met the neighborhood boss (chefe do bairro), a man who sells dried fish in the market and knows everyone. The conversation turned more to treating the epilepsy than taking him away. He thought this the better course of action - and then I had to leave.
When I was sent back to Gurue with TechnoServe, I learned that there was an uncle who gave him baths when he needed it. And that many of his injuries happened not because of abuse, but because he would have seizures in the middle of the road and fall down with no one to catch him. I learned just how poor his family was, and how much of what I had perceived as malice was actually an inability to change pretty horrific circumstances. I learned that he had started to read books with the new Peace Corps Volunteers and I saw him laugh and smile for the first time and many times after that. When he had seizures near the Peace Corps Volunteers' house, they made him as comfortable as possible to avoid injury. I contacted the neighborhood leader again and we managed to get him an appointment with the psychologist in Gurue who treats epilepsy. The boss arranged for a family member to accompany him, and the driver for our project (the same as my invinha confidante) drove us for his first appointment. He was accompanied by an uncle who also suffered from epilepsy, although his was much less severe. They were both given medication and sent home. At their two-week follow up visit, I met them at the hospital and we went to talk to the doctor about the medications. Neither Mateus nor his uncle had had a seizure since starting the medication.
A week later, during a beach weekend during my last few days in Mozambique, the neighborhood boss called me. Mateus drowned, he said. He was in the river and fainted.
I sent the family 200 meticais (about $8) in order to help with burial costs. I wasn't able to go because I was so far away and the burial was to be the next morning (no way to preserve the body).
I am grateful to have started a friendship with the neighborhood leader, by far the most competent administrator I have met in my 3+ years in Mozambique. I am grateful to the nun who continues to be of service to all those in need and who is a rare example of who a nun should be in a world of common corruption. I am grateful to have met the social services bureaucrat, who taught me that corruption and a good heart are not mutually exclusive.
I am grateful his uncle now knows how to get help and free medication for the other epilepsy sufferers in their family. I couldn't have done any of this without the help of a small group of stellar Mozambicans.
I am grateful because I knew Mateus. I am grateful to have met his family, and to have seen the way his uncle cared for him and the way his uncle smiled every time Mateus asked for juice and cookies (he asked all the time). I am grateful that Mateus died before he had another seizure in public necessitating a demon exorcism (beating). I am grateful that he died during the best year of his life, and that he died knowing how it feels to have people care about your situation and knowing how it feels to not be completely alone.
Mozambicans usually have two names. One, they use publicly, the other, they use at home. At home, Mateus was called Segredo (Secret); his story need not be one too.
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| Mateus Manuel |
