April 23, 2014
My palms are almost perfectly square, and my fingers are short. I think my hands look a little like my father’s whose hands would look something like his father’s in turn, except that my grandfather’s fingers were deformed by the years he spent making furniture after the advent of supermarkets wiped out his very small grocery store.
All this is just to say that my hands are not large, so I should not be able to enclose a 19-year-old man’s bicep between my middle finger and my thumb. I can’t get my fingers anywhere near around my own very skinny arm anywhere but at my wrist.
So it was a shock to see just how thin Jean Hilaire had gotten.
I hadn’t seen him in months. When we were selecting new members in Pyèrèt, where he lives, he was always around. He served as our guide, helping us find the households we had been referred to so that we could conduct the surveys we needed to conduct. He made that part of the process easy because he knew everyone and was willing to help.
His mother and younger sister, who is a teenage mother of two, both joined the program, and one of our case managers began working with them. We occasionally heard from Jean Hilaire because one of our other case managers hosts a evangelical call-in show on a local radio station, and Jean Hilaire would call him now and again just to say, “Hi.”
Then he disappeared. As it turned out, the phone he had been using to call us gave out and he couldn’t afford to replace it. Then he went to Port au Prince. His brother-in-law, a young man not much older than he, convinced him to join him there. The brother-in-law would look for work to support his wife and kids, and Jean Hilaire would try to learn a trade. He signed up for a plumbing class.
That was at the beginning of the fall.
Every three months, we bring together all our members for a three-day workshop. They talk about the successes and the failures they’ve encountered over a three-month period. It is a way to build the confidence of members who are moving forward while it motivates those who are lagging behind. It also enables them to share advice about problems that they may share. In late March, I was at the session near Pyèrèt, and I saw Melisiane, Jean Hilaire’s mother. Naturally, I asked for news of Jean Hilaire.
“He’s really sick. Hadn’t you heard?”
I hadn’t heard. So I went by Melisiane’s house to see him after I had done what I wanted to do at the workshop.
It turned out, Jean Hilaire had returned sick from Port au Prince. He was coughing and feverish. He had no appetite. He had spent more than a month, lying in his mother’s house, wasting away. When I found him, he was in a bed hidden behind a curtain, in his mother’s back room. I pushed the curtain to the side, and sat on the edge of the bed with my hand on his forehead. He wanted to sit up to talk to me, but he just couldn’t. He was too weak. I asked him why he hadn’t sent word to me to let me know that he was sick. Didn’t he know how important he was to me? He turned his face away from to the wall and wept. He didn’t know, he said.
Melisiane had made three trips with him to see a local healthcare provider named Mis Marie, but he had only grown worse, despite the medications she prescribed. In Créole, a “mis” is a nurse. But Mis Marie is not a nurse. She has a small business prescribing and then selling simple medications for basic complaints. She lives in downtown Saut d’Eau, and has a wide reputation throughout the county. She probably does a fair amount of good, helping people with minor aches and pains and the sorts of standard illnesses that can be easily diagnosed and treated with simple antibiotics or other straightforward medications.
But she’s a problem, too. Melisiane was going back and forth to Saut d’Eau, spending money on the motorcycle taxis, the consultations, and the medications, money that she needed to feed her kids. Yet Mis Marie could not treat Jean Hilaire, and she never said anything as simple as, “This case is beyond what I can treat.” She never told Melisiane to take her boy to the hospital, even as Jean Hilaire got worse. He grew weaker and weaker, unable to get out of bed most days. And even when he could have gotten out of bed to sit in the sun, he preferred not to. He was ashamed of his weakness, ashamed of how thin he had become, so ashamed that he was afraid to bathe in the nearby stream, for fear neighbors would see his ravaged body, so ashamed that he had hidden even from Melisiane’s case manager, Zetrenne.
So when I saw him, I told him he had to go to the hospital, and I arranged for him to go the next day. That meant giving them some money to make the trip. Melisiane was still at our workshop, so she sent Jean Hilaire with his younger brother, a teenager named Abraham. Seeing Abraham and Jean Hilaire together was painful. Abraham is not a lot younger than Jean Hilaire, and though their faces are very different, their body types are more or less the same. They are both very thin. But Abraham is healthy, and looking at him next to his older brother made it easier to see just how much weight Jean Hilaire had lost.
They went to the Partners in Health hospital in Mirebalais the next day. It’s a wonderful facility, designed to be Haiti’s premier teaching hospital. It offers first-class care for virtually nothing to anyone who can get there. But it is a little overwhelmed by the number of people it attracts, and so it can be challenging for sick people to navigate. When we have CLM members who need services, we try to accompany them, helping them figure out the series of lines they must stand or sit in. The lines can be confusing. Our close relationship with Partners in Health – it has been our principal partner in the field since the start of CLM – means that PIH staff will go out of their way to help our members. But only if we are there to ask them for extra help. And what they can do, even by going out of their way, is sometimes limited by the strain that a whole nation in need of their services can put on their system.
But the minute Jean Hilaire got to the front of the line, the hospital staff knew what they should be looking for: his cough, his fever, his loss of weight all suggested tuberculosis. The older novels I like to read call the disease “consumption,” and it’s easy to see why. Jean Hilaire had wasted away to almost nothing.
The first thing that the PIH doctor did for him was to prescribe a series of tests: blood tests, but also a chest x-ray and a series of sputum samples. For the latter, Jean Hilaire was told to come to the hospital three times on consecutive days. But the first trip to the hospital wore him out so terribly that it was a couple of days before he could make his second trip. He just couldn’t get out of bed.
But the tests eventually showed clearly enough that Jean Hilaire was suffering from tuberculosis, and PIH immediately put him on a multi-drug regimen that will last six months. He’ll have to come into the hospital every month for refills, and we’ll need to follow him closely to ensure that he stays with the treatment.
We’ll need to keep an eye on his family as well. Between his mother, his siblings, and his two nephews, there are nine people crowded into a two-room house. And the PIH doctor’s instructions that tell him to stay someplace well ventilated only mock the reality that the family faces. We think it is perfectly likely that others will start to show symptoms, and then it will be our job to get them to the right care – not from Mis Marie, but from the fine PIH hospital – right away.
But things are looking up. Jean Hilaire has started to feel up to getting up and about. He needed a pair of sandals, and when Zetrenne gave him a few gourds to buy a pair, he wanted to go to the local market himself. We asked him not to. The crowded market is the last place we should be sending a young man with TB.