Patient names and minor details have been changed for confidentaility. “Youssef” has consented to have his story told in this forum. I told him that it was as if his picture and story were posted on every building in the whole camp, in all the villages in the world. He was lucid, in full capacity to make this personal decision, and pleased. He asked appropriate questions regarding the pros and cons of his story being told. Prior to this post being made, a translation was given to him courtesy of the local Imam, whom he trusted. As well, Youssef made all decisions, in consultation with his family and the treating team, regarding his medication management.
Every Wednesday for a couple of hours, the entire mental health team sits around a table and discusses difficult cases. The meaningless, absurd, touchy and confusing also find their exploration here. Minimal direction, gentle redirection, no blocking; this is a safe space. I hesistate to guess that it is the most important two hours of our week as a team. Having been here for five months, I am by far the most recent addition to the team; the counsellors know each other well, and a solid trust has developed. During these two hours, we delay our response to referrals, and counsellors do not book patient sessions. About the only thing that routinely disturbs them are distribution days by the World Food Programme; few things trump food.
It took a while to get settled into the run of things, but shortly after that happened, I noticed a pattern in the stories. Well, maybe “pattern” gives the impression of something more structured than it was. Mostly, the stories did not make sense. But they did not make sense in a way that reflected the cases in a meaningful way. Chronology is less consistently used as a way of organizing information in Farchana, but even still, there was a fractured or diconnected quality to the case histories.
We started inviting some of these patients to our meetings to do group interviews, and it became clear that some of these persons were psychotic, and met criteria for a diagnosis of schizophrenia. This is the story of one man whom we have gotten to know well over several months. (Note that some parts of this story were written and posted months ago but were later removed from the blog due to confidentiality concerns.)
Youssef, a long-term patient of Issakha’s, was first presented one Wednesday, having the unique complaint of “a burning sensation” in his chest, a head-ache that came some nights, and his family thought that something was wrong. He isolated himself for long stretches, and occasionally said things that were incomprehensible. Youssef’s only consistent interest was Islamic studies, and he was a good student when he showed up for lessons. A visit seemed appropriate.
Some of the larger blocks in the camp are a labyrinthine maze of brick and straw walls, rogue livestock, delapidated latrines, and kids running everywhere. Without Issakha as a guide, I would not have known where I was. Eventually, we stopped in a passageway and Issakha poked his head into one portal and called out something in Masalit. A man who looked as old as the hills came by to greet us warmly. Youssef’s father ushered us in and put some mats on the ground so that we could sit.
There was one tent, a small shed-like structure of brick and mud in the corner, some space for a hearth and storage for the livestock feed (big bushels of hay held back by sticks). Youssef’s father put some water on the boil, and then went into the shed and came out with his son. Youssef agreed to speak with Issakha and I, and sat down on the mat under the hangar that provided sparse shelter (four wooden poles with thin thatched roofing on top). He expected the interview to take place right there in the opening, with parents, siblings, and livestock circulating, not to mention the mid-day sun beating down. I asked if we could sit under some cover, and Youssef took us to his shed. Issakha and I sat on the earthen floor, and Youssef sat on his small, wooden bed, which took up most of the back wall. If all three of us had sat on the floor, it would have been a tight fit.
After brief introductions, we started with a few open ended questions that were met mainly with one word answers. He spoke clearly, deliberately, and had an air of stoicism about him, as if he was in complete control of the information he meted out with an economy of words. That is, there was zero rambling, and little emotion showed. At 27, Youssef had been in the camp for about four years, and had no friends, no social life, and indicated that he spoke mostly with his family, whom he felt looked after him well. His only complaints were trouble falling asleep, occasional head-aches, and a diffuse and vague sensation of burning over his chest and abdomen. According to Youssef, there was no cause or specific meaning to these symptoms, other than that they indicated that he was “sick.” I started to get the feeling that there may be some psychosis. There were reasons to suspect this: he was the right age (in males, it usually shows up in the late teens and early twenties; women a few years later), the vague and unusual somatic symptoms, his lack of social contact, and that his comportment was kind of “distant.” He answered all of our questions quickly and accurately, but it was as if there was no emotional connection. In psychiatry, this may be a soft sign of schizophrenia, and we describe it as if you are speaking to a person through “a thick glass wall.” More directed questions revealed that he heard voices (that argued with each other and were occasionally angry with him) and had thought insertion and broadcasting (he felt that thoughts were “placed” in his mind, and that others could occasionally read his thoughts).
What’s more, several times over the past four years, he had taken an intramuscular injection medication called “Mondeket” (Modecate or Fluphenazine Decanoate), which he said helped him with “the burning.” Youssef told us that he wanted injection medications from MSF, as they were the best. When I asked if he had had side effects from this medication, he denied any. But then when I stiffened up my legs and asked if that happened, he said “yes.” And when I twisted my head to the side and asked if this had occurred, Youssef lit up like a Christmas tree and excitedly explained how horrible it was for a couple of day last year when his neck muscles were rigidly contracted as if he was looking at his shoulder.
Antipsychotic medication (also called neuroleptics or “major tranquilizers”) can have some bad side effects, dystonia (contracted muscles that feel “stiff”) being one of the most common. It can be *very* uncomfortable, and Youssef was pleased to know that these symptoms were controllable medication side effects, and that he could continue to take medication that would help him.
While we were doing a short physical exam (ESRS), some food and tea were shuffled through the door and Issakha informed me that not partaking would be impolite, so we washed our hands in a bowl of water, ate the salted tomatoes, drank the tea, and chatted about the drawings on his walls and a subsequent meeting. We see him every week, sometimes at his home, and sometimes he drops by our health center. Meetings have proven difficult to arrange, but one way or another, everyone on medications is followed regularly by MSF’s community health worker assigned to the block in which the patient lives, and Youssef sees Issakha and I minimum once a week. He’s doing well, as are most of the persons with schizophrenia here. Some suppose that given the protracted brutality of the uprooting and displacement from Darfur to eastern Chad, some four years ago, persons with a more severe form of this disease simply did not survive. Youssef benefits greatly from a close family and his community involvement.
For those wondering, MSF currently stocks three antipsychotic meds (a high- and low-potency typical, and one atypical), one benzodiazepine, one anticholinergic, one SSRI and one anticonvulsant. A relatively new addition to MSF projects, these medications allow us to provide a solid level of medical care to certain patients with psychiatric disease.