I wrote to Martineau in Haiti to see if he had any insights into why Janel might be acting the way he was. He didn’t, but he was determined to try to figure it out. He set off to retrace Janel’s path from the time before he first met him. We hoped that if we could better understand Janel’s past, maybe we could begin to make sense of his present.
First, Martineau went to visit Wilner. Wilner had met Janel just over two years before we did, when Janel became involved in his church and decided to convert to evangelism. Over subsequent months, Janel began complaining of headaches that progressively worsened. He went to a local clinic, where a CT scan was recommended, but his family couldn’t afford it. Sometime in the next year, Wilner noticed that Janel was no longer coming to church, and he went to look for him. He found Janel living with his mother and no longer able to take care of himself. He couldn’t bathe, dress, or eat on his own, his headaches had become more severe, he had developed trouble walking, and he had begun urinating on himself. Wilner didn’t think Janel’s mother was able to adequately take care of him due to her living conditions, so he took Janel into his own four-room home, where he lived with his wife and two children. Janel’s mother visited him at Wilner’s house and helped take care of him. When HUM opened, Wilner took Janel there to be evaluated, and he was finally able to get a CT scan for free. The scan revealed the tumor, and Janel was referred to Martineau.
Wilner didn’t know much about Janel’s life before he met him, but he gave Martineau directions to Janel’s school. It turned out that Janel had gone to school in the region where Martineau had worked for another PIH/ZL hospital for four years before being asked to join the first group of physicians at HUM. Since Martineau was well known in the community, the staff at the school let him look through the archives of report cards to find out which class Janel had last been in. Martineau found the teacher’s name, and the staff at the school gave him directions to find the teacher’s house.
The teacher explained that Janel lived in a very remote impoverished area with no roads leading to or from it. Janel had to walk several hours to school, traversing a river along the way. When he arrived at school, the teacher thought he seemed “dans les vapeurs” (“in the mists”), sometimes staring off. He was slower to learn than the other students. The teacher had presumed all of this was because Janel was tired from walking such a long distance every day, and because he probably went hungry on many days.
Leaving the school, Martineau continued to trace Janel’s life path, finding his way to Janel’s mother’s house. The route took him off the dirt road into a wooded area and over a small stream. When he arrived in Janel’s community, Martineau asked an elderly woman to show him which house belonged to Janel’s mother. The woman led him to a one-room shack made of crumbling wood panels built on a cracked slab of concrete. The house was empty except for a small mattress on the concrete floor and clothes hanging from the wooden rafters.
Martineau waited for Janel’s mother. She arrived with a small black plastic bag of items she’d bought at the market. They spoke in front of her house.
She told Martineau that Janel had been born normally at home. He’d had a normal infancy and childhood, walking and talking at the same age as other children in the community. She described Janel as a sweet child who didn’t misbehave. He didn’t begin going to school until age twelve. She didn’t give a clear reason for this, but Martineau presumed it was because she couldn’t afford the school fees, uniforms, and school supplies. Janel had to repeat several years in school multiple times before being allowed to move forward. When his illness began at around age twenty-one, he had reached fourth grade. He failed the exam needed to pass to fifth grade.
From what Martineau was able to piece together, it was possible that Janel’s tumor had been there for many years before causing the headaches that led him to seek medical attention. It may have even been the cause of his difficulties in school. But the odd behaviors and drastic fluctuations Janel was exhibiting in Boston were completely new. Were they due to the neurological stresses of the tumor and surgeries, the psychological stresses of being separated from his home and family, or a combination of the two? I didn’t know. I just hoped he would improve.
* * *
It was May, and Janel was nearing the end of his six weeks of chemotherapy and radiation. As planning began for his discharge from Brigham back to Hermide’s until the next round of treatment, I received this email from his oncologist:
The plan had been to restart chemotherapy about 6 weeks after radiation and do 6 more monthly cycles. It would be intensive chemotherapy again, typically given outpatient. We don’t know if adjuvant chemotherapy is even needed given how rare PPTID is. We might be over-treating? On the other hand, it could increase his chance for cure. There is no data to guide us unfortunately. Given the difficulties we have faced until recently and the fact that we are not sure what is the correct treatment for PPTID, I am inclined to skip this phase of chemotherapy.
We wanted to give Janel the fullest chance of a cure from his tumor. His oncologist seemed to be indicating that it wasn’t clear how helpful six more months of chemotherapy would be toward that goal since his tumor was so rare. Did the unclear benefits justify the clear risks? Beyond the medical considerations, how would he handle another six months away from home? And would Hermide be willing to take care of him for six more months?
Despite the waxing and waning of Janel’s mental state in the hospital, he hadn’t demonstrated any of the challenging behavior he had at Hermide’s. But he also hadn’t done so at the rehab facility before he first went to Hermide’s, so we really had no idea what to expect when he returned to her home. How could we balance the possible, but uncertain, medical benefits of additional chemotherapy with the potential psychosocial harm of putting him—and Hermide—through what they had been through before? Six months would be a long time, longer than the entire period Janel had been in the US up to that point.
I pondered these questions as I sat in a chair next to Janel’s hospital bed at Brigham. Visiting him for a half hour or so each day had become a ritual I hoped might help to break up the monotony of his life in the hospital. But I acknowledged it was maybe just as much for me to feel like I was doing something for him. Having just read the oncologist’s email before visiting him, I wondered if I had spent more time writing emails and having phone calls and thinking about Janel than I had actually spent with him.
I looked over at him. He was staring blankly at the muted television, where a daytime talk show’s guest laughed silently. He had shaken my hand when I came in, but I hadn’t been able to get him to talk to me.
There had been a few fleeting moments over the past months when his toothy grin had shown us that he was in there somewhere. But who was the he in there? Who was this twenty-three-year-old man? Was he scared or sad or homesick? What was he thinking about and dreaming about during these months in the hospital? Could he remember what it was like when he was healthy? What had he talked about and thought about and laughed about then? How would he remember his time in the hospital, in Boston, at Hermide’s? Would he remember it at all?
Looking at him, wondering about his inner life, I thought of the Haitian proverb Tout moun se moun (Every person is a person). It’s a simple phrase, but a radical notion. If every person truly believed that every other person was a person just like them, then how could anybody accept inequity, let alone racism, sexism, classism, and the conflicts that arise as a result of these individual views and societal forces?