I sit silent in the darkness of our street without electricity, six candles burning on the breakfast table and a copy of the book I am reading “Young Stalin” by Simon Sebag Montefiore, in a world far from the conventions and hedonism of Christmas. I like this peaceful moment in my five layers of multi-colored clothing, two pairs of socks, hat and scarf (the only exposed areas are my eyes, fingertips and the tip of my nose). It is a week before Christmas, the air is still and misty, and I think, though I may be wrong, that snow is on its way.
Curious events have occurred over the last two weeks, leaving emotions that are difficult to contain and even more difficult to express. On Friday, 9th December, the concilium members decided that Rafiq should be given a chance of treatment for drug-resistant TB, and, if after 3 weeks he did not improve, we would re-consider the diagnosis. An unexpected decision and one that was not easy for any of the panel members. Given the potential consequences, this was a brave decision. Rafiq is a sick child and one has to justify every action, because any action could be the one that is fatal to him. His mother has withered from caring for her son who is still slowly deteriorating after 11 months in hospital. She remains faithful to the God she knows, praying relentlessly in Rafiq’s room, a reflection of her love for her son and her duty to her faith, meshed in an unquestioned manner. In this medicine of uncertainties, both the doctor and I explain to Rafiq’s mother the realities as we see them: the diagnosis is not certain but given what we know of the history and ruling out as many differentials as possible (we are still waiting on one more test), this is likely to be drug- resistant TB. If he does not receive treatment, he will not improve on his own (I cannot use any more transparent words, but she knows what we mean). If he receives what we hope is the appropriate treatment, he may survive or he may not tolerate the toxicity of the drugs. Her response – “there is no other option.” This was the informed consent that Rafiq’s mother signed.
On Saturday, we started Rafiq on a cocktail of five medicines, a combination that will hopefully kill the TB bacilli. He looked terrible the day we started him on treatment, his jugular throbbing at the neck, the machinery of his heart straining with resistance and ribs exposed with every inhaled breath he took. His right lung full of fluid pushes down on his liver and the fluid in his belly pushes against the diaphragm and how his tiny frame copes with this is quite phenomenal. I don’t think he fully understands the treatment and I have no idea what he makes of our tall worried looks but when we tell him we will start some new medicine, he looks at us with distrust, his head flexed into his pounding chest.
I speak about Rafiq to Junie, one of the new members of the team, a slightly nutty but brilliant woman, who the kids adore. I hope she can explain to Rafiq a little about TB and why it needs to be treated. The kids call her “mualima” meaning teacher in Tajik. She writes a little story to explain to the younger ones what TB means. Our tall office assistant or “aka” (big brother to the kids) narrates the story to Rafiq and the others:
TB was a furry and naughty little germ. One day TB played a trick and made himself so tiny that no one could see him. He thought it was fun to hide. The wind was blowing hard and TB decided to catch the wind as it was blowing by. It was fun to fly up high and then swoop down low on the wind. TB flew very close to some children who were playing near-by. One of the children took a deep breath in, and TB quickly popped into his mouth. TB started to make mischief inside his body, making him feel very hot, then making him cough, then making him feel very tired.
His family was very sad to see him so hot and tired and coughing. They decided to take him to the doctor.
When the doctor saw him hot and coughing and tired, the doctor said “I think that TB has paid him a visit. I know how to make that naughty TB go away”. The doctor gave him some medicine and he swallowed it down. When the medicine was inside his tummy, it started to fill up all the spaces inside him with its good stuff. The medicine made so much good stuff that it took up all the room inside him. TB was squashed by the good stuff and felt so uncomfortable that he decided it was time to leave.
When TB was gone he started to feel better, there was no more coughing or feeling hot or tired. His family was so happy that he was better, that they held a party to celebrate.
The children here love story telling and even the most mischievous (there is one girl, aged three, who likes testing my knuckle reflexes with a wooden car) are attentive. It is strange that in a TB institute, the message the children receive about TB is that it is caught by poor hand washing and a story like this provokes a healthy discussion.
It has been a week since Rafiq started treatment. The side effects from the drugs leave him weak and feeling sick, though the sickness is transient. His body remains unstable but he sleeps better at night. His mother has spent thousands of Somoni over the last 11 months, so MSF now pays for all his investigations and treatment. His body needs to re-build itself and we buy him the local ingredients so that his mother can make him food he enjoys. In a hospital where there are other children who do not as yet get this privilege, it feels unjust to exclude them, but today I have put my personal dilemmas about the role of an NGO aside, because there is no other option for Rafiq.
Today it started to snow! Though, Rafiq takes up most of my thoughts, an evolving obsession I need to learn to control, the snow is a beautiful distraction. I walked to work and the slim students defy the snow, fashionably dressed in their Beatles outfits, with a carpet of snow dusted lightly on the heads. There is a sense of magic in the air – there is no Santa (there is no obesity epidemic in tajikistan!), but instead old men clustered together to keep themselves warm in their fur hats or turbans or little black caps, and long velvet blue tunics. I walk past the bread shop where a group of them play cards, a daily ritual not disrupted by the cold. Right then, in the morning mist and rising sun, the blue tunics, called ‘Joma’ come alive. The old men, emerging from the mist, with their snowy white beards, look like magicians, as though they will be taken by the wind and turned to snow dust and I love it – a mystical illusion rather preferred to a glossy one.
So this will be Christmas, away from mum’s freshly cooked roti and indian curry. But our team is a cohesive one, one that resembles the family and loved one that I miss so dearly. With my last thoughts about Rafiq, I pray to all the Gods and mystical beings, that he starts to feel better. If anyone deserves a break this Christmas, it is those kids away from their families by no fault of their own, other than to have been exposed to a disease that is polarized to the poor.
The hospital is having a party on 26th January and there won’t be any old man, but an overweight Santa played by our resident logistician, the great Tamas. It is exciting for the kids who I imagine will be happy for any distraction to their institutional lifestyle. The snow is now very thick, and it is beautiful, a sense of peace in this chaotic world. It is hard to hold back my not so dulcet tones singing in true NGO worker John Lenon’s “War is Over” as i crumble my snow boots into the dense snow. I think even I have accepted that Christmas is here and actually, it is not so bad!