I have been in the Republic of Karakalpakstan for 3 weeks, an area that MSF has been working now for 13 years in the area of Tuberculosis. My role is to understand how a former soviet union country functions and how MSF coordinates the comprehensive treatment of tuberculosis (both drug sensitive and drug resistant) with the Ministry of Heath.
MSF's work challenges every prejudice that I have of the medical system and how children and their families and staff in the medical field cope with their daily lives.
I start the story in Taktakopir, a rayon (district) located about 2 hours away from the capital of Nukus. Jennifer, her Karakalpak translator and driver take me on a journey to see 2 children who are on treatment for TB. The desert of Nukus is left behind and life springs up from the desert, low bushes matted with autumn colors and rivers with lone fishermen in kayaks. There is no address for the child but the nurse has the coordination of a hawk and puts me to shame with my obsessive need for landmarks to know where I am. We pass a graveyard in the distance which resembles a small village with domes and small minarets, and the muslims in the team face their palms upwards and slowly bring their arms down, as though to wash themselves or perhaps to receive blessings from their dead ancestors.
When I ask the nurse whether she knows where the child lives, she looks at me, the face below her flowered headscarf tells me to shut up and trust her. I am still not quite sure when we enter a large yard, like a concrete car park with no cars, and a building left behind from what appears to be the apocalypse. I continue to trust her! Of course she is right and in the top right of my visual eye, there is a small white building with blue wooden windows and the curious eyes of a child. Our car is parked, white with the MSF logo, lonely in this disused car park and we step out to talk.
I meet KB, a 12 year old boy who is being treated for drug resistant TB, a course of medicine that is likely to take at least 20 months of his life to treat and cure, of which 4 months has passed. He wears a white baseball cap and he is flanked by his two siblings, the little one aged 3, with mongoloid features and round face, mistrusting of our presence. I ask him mundane questions about how he feels compared to before, desperately hoping he will not cause me difficulties. He smiles at my English with his head bowed, while his siblings giggle in the corner. The ‘discussion’ is as follows:
KB: I do not like taking the medications because I feel sick
Me: This is normal. You should take some anti-sickness medication but you must continue to take your medicine.
KB: I have headaches after taking the medication
Me: This is normal and you must drink plenty of water (10 glasses per day) and rest after taking the medicine. But you must take the medication.
KB: While I experience the headaches, I have difficulty seeing clearly
Me:The medicines are unlikely to cause eye difficulties and you must take the medicines. Are you going to school?
KB: I am not allowed to go to school
(I am not sure when children here are allowed to go to school when they are treated for TB. Given the fact that his investigations show that he is not infectious, I cannot see any reason why he could not attend the school).
Me: I will find out for you why. What do you do during the day?
KB: I watch TV (4 hours) and look after my siblings.
(His parents are at work, possibly in the cotton fields)
Me: Try and play with them outside when it is sunny so you can gain some strength.
I take a picture of the three children and walk away saddened that I was perfectly hopeless at relieving any anxiety this boy has and have dictated to him that he must take the mediation ‘or else’. I have never taken TB medicines, and I doubt if I would ever truly be obedient to the pressures of my higher authorities given my anarchic view on certain types of authority. I have heard the expression “we need to win this battle” in the sphere of MSF meetings, a phrase that is intended to help patients, but it sits uncomfortably with me. The TB is not simply a target, the medicine a bullet, and the soldiers being the doctors. The effect of treatment (and abstaining from treatment) encompasses the whole body, which desperately tries to survive while the bullet tries to kill the evil bacilli. As with all battles, the heroes are the pawns, the patients who attempt to live through the fear.
I think KB has headaches partly because he is not with his friends at school and has the stress of looking after his younger siblings everyday. My comment to ‘play’ feels facetious but I have no idea what else to say. I realize my incompetence at understanding this culture, something I challenged myself to overcome when I came to Tajikistan to work. This boy has TB in the shadow of his caregiver. He is poor and his destitution is amplified by the fact that normality for him has changed because the government does not always allow children with TB to attend school, despite the fact that he is doing well on treatment and is not infectious. His family is somewhere but I do not know where. I leave telling him to watch less TV - hopeless suggestion!
I become more anxious about seeing the next patient. I need not have been. The compound is not the desolation of the previous child’s life, and has haystacks tightly packed in the corner. When the grandfather, the source of the child’s TB arrives, he is a tall skinny man, who has recovered from his TB. With his chinned beard, old russian hat, and ‘top gun’ black sunglasses, he is an absolute delight and welcomes us to his world. His grandson, the child in question, is called from the fields where he is playing. The 4 year old boy arrives like a prince on the back of his sister’s bike (double the size of her). He has TB of the lymph nodes and is responding well to his treatment but he is not interested in us and deviates to the MSF car, where he can play. I leave him to his dreams.
My two patients have different lives but are equally poor, the difference being that the latter is supported through his childhood by the his surroundings, while the former appears to be supporting his own.The drive back is one of contemplation and the romanticism of the land returns to me. In this sandy desert, there are donkeys and traffic consists of a herd of healthy cows and sheep. More old men resembling the old man from ‘Karate Kid’ (with a russian hat) stroll along the dusty roads. I have never really seen a world like this; it is like stepping back in time to Europe 100 or so years ago. The fashion of the young man is of flatcaps and cigarettes while the young women support more traditional wear.
A donkey and his cart is stacked with hay, and his young master encourages him with a stick. Life appears to be quite self-sufficient and tranquil. Of course there is so much to learn, and the balance between romanticism and reality could only be understood if I were to stay here longer, but there is a sense that in the face of potential mortality, people live in contentment. I see that despite the visible emotional restraint of people, there are bright colors in the houses, the clothes, the cars and the animals.