The Tajik people are big on fate. Their version of the islamic saying ‘inshallah’, which is nazeeb boshad, means more like “if fate so wills” than “if Allah so wills”. Maybe this is because Tajikistan has always been a kind of in-between place, where Persian kings stopped awhile but never actually stayed and Chinese merchants passed through taking silks to more wealthy places. In the Soviet times, it was the furthest place out and seems to have got the least attention. When the Soviet Union dissolved, so did Tajikistan’s economy.
The Tajik identity, too, seems to have become lost somewhere along the way, leaving a strange mixture of feelings, opinions, beliefs and customs behind. You can see it in the holiday season happening right now. The dominant religion is Islam, so though there is a word for ‘Jesus’s birthday’, Christmas is of course not celebrated. The more surprising therefore to discover that Christmas trees, office parties, Santa Clauses, and exchange of presents abound – for New Year! It’s called a New Year’s tree, and Santa Claus is called Grandfather Snow, but still … What an integration of customs! I hear there’s to be champagne and fireworks on New Year’s Eve too, surely that’s not traditional Tajik. But I like it!
Working in the pediatric TB hospital has been challenging the last while. Due to funding problems, the hospital has to do without many things. One of those is climate control i.e. heating. Even though the temperature dropped considerably in November, it was not possible for the central heating to be turned on until Dec. 15th. Poor staff, poor children, poor us!
But now it’s on, it’s lovely and toasty and the kids aren’t getting colds any more.
MSF provided each child with a New Year’s present of a coat and one other clothing item to help keep them warm and healthy, plus chocolate and a small toy. Wonderful to see their excited faces and pride in showing off their new jackets.
Although the kids in this hospital don’t have MDR-TB (multidrug-resistant tuberculosis), our project as a whole is very active on the spot, viewing it as one of the best places to nip MDR-TB in the bud, as well as being a jumping-off place for further cooperation with the National TB program.
Our psychosocial department has developed a play therapy program for the hospitalized kids. Two of our counsellors go in each weekday morning for two hours. We offer health education about TB, give them rules of behavior and cooperation, and the children can choose from different activities that stimulate development, like puzzles, Lego, drawing and coloring, and socially interactive games. What always strikes me is their eagerness to learn and the way they just soak up all the stimulation they’re being offered and even ask for more. With my few words of Tajik, I sometimes try to write down what they’re saying to me, and then they want to know the English word, and before we know it we’re in a mutual language lesson.
Stigma raises its ugly head regularly. Just having TB is a stigma. Sometimes the patients themselves are blamed for getting the disease; sometimes it’s the neighbors who are afraid they’ll catch it from you; some people have a teenage daughter and fear no one will want to marry her. So people are not keen to go to the doctor when their child develops symptoms. The doctors in the past have not been keen to treat children (out-dated belief that children don’t get DR-TB). The families are not keen to have the neighbors know, as word gets around and then they are socially ostracized.
We noticed the problem when our team visited a family down south, where we have been providing transportation money for the DOTS (Direct Observation of Treatment Schedule) nurse, as well as adherence counseling. Counseling is more or less compulsory in TB programs now, as is taking the medication under DOTS. This, in short, is a nurse who watches you swallow every last pill, every day for months and years. We are helping out the DOTS nurse here, because the mother won’t take her child out in public to the community clinic to get the medication, for fear of stigmatization.
If the nurse, who is a competent and lovely woman but quite elderly, happens to be sick or can’t make it, the mother will not allow even a close family relative who has had nursing training to replace her, because then she would have to reveal the nature of her daughter’s illness. This places the daughter at risk for missing treatment and developing more resistance to the drugs. Also the family has decided this girl, who is 15, doesn’t need to go to school anymore, as they will be arranging a marriage for her before long. I hoped to listen in on the session our counsellor had arranged with her, in order to hear more about her fears and so find ways to tackle them, but this too was seen as a possible breach in confidentiality and I was asked to wait outside.
So how are we to tackle this stigma, to start remolding the beliefs and attitudes of these people who are often so poorly educated and even less well-informed about TB, through poverty, cut off from current affairs and information streams?
A grandfather recently took his child home from the hospital against all advice. The child was severely ill, maybe dying, but he couldn’t see that she was getting any better by being in hospital and wanted her home. “What if she dies?” we asked. “Then that’s her fate”, was his answer. We are now moving heaven and earth to treat her at home and she is getting better. Fate? Or medicines?
The Tajiks have been through so much throughout history, I can easily imagine how it’s better for your sanity to shrug your shoulders and put it all down to fate, than to try and fight situations you don’t understand or are powerless to control. In psychology they call this reaction learned helplessness, but I like the Tajik version better: nazeeb boshad.
Still, no reason not to help fate along a bit; we’re working on it!