Time flies and on occasion the need to react feels impulsive. The project suddenly requires quick thinking and meetings to discuss the unsettling news from the Pamir region. I refrain from describing what we hear from reports in case we cause damage to the people we are trying to help. I hear of an epidemic of leishmaniasis (Kala Azar or ‘’black sickness’’) in Tajikistan and a need for MSF to provide assistance. Our small paediatric TB project, contained in the chaos of what we have now defined as ’normal’, seems a little anxious.
Drawing our eyes back to the project, we learn of a 12-year-old girl needing treatment for drug-resistant TB. She lives in the north of the country, 400km from the capital city. This area has no drugs to treat anyone with drug-resistant TB. We agree, in full MSF spirit, to go and help the Ministry of Health doctor support this patient.
We arrive late in the evening, our translator preoccupied with the disturbances in the Pamir. She reacts to the phone with a nervous tick hoping for any news, though her professionalism is unashamedly contained regarding the task ahead. I joke to lift the spirit. My Tajik is now at a level where I can flirt and argue which I think will suffice but my modesty is very often challenged – I try and be poetic in Tajik but quite frankly it never works !!
I had a Tajik lesson the other day. What I wanted to say is ‘’I like the summer season because I like to sit under the tree, meditate and listen (gush kardan) to the beautiful birds’’. Instead, I say, ‘’I like the summer season because I can sit under the tree, meditate and fart (guz kardan) to the beautiful birds’’. There are always little moments of joy in the hardships of learning a foreign language. The air is fresh again and an escape from Dushanbe and the situation in the Pamir seems to come at an ideal time.
The next day, we head towards the hospital. I meet the doctor looking after the patients in the TB hospital, her wise expression enhanced by her glasses perching on her nose. We sit on the couch and the introductions are formalized in our usual set manner, a session that requires the added time of translation from English to Russian and visa versa.
For me it is interesting to see how the girl we are here to see will react to us. I meet a girl in green fluorescent slippers and a yellow dress with flowers, a style not uncommon in the summer of Tajikistan. The left side of her neck is covered with a green cloth. She looks scared, her posture strict and upright with her uncle nodding silently with desperate appreciation. I don’t like his gesture of desperation, this helplessness, and this subservience. I calm my thoughts and I ask the girl her name.
This is Zulfia’s* story. TB pervades her family institution, the roots emerging from her grandparents, both of whom died from the disease. Her father works and lives in Russia, bringing money to the large household. Her parents are divorced and she lives with 15 other members of the extended family. She was five years old when she was first diagnosed with TB of the glands in her neck. She did not take her full course of medication – a common and understandable story – she felt better and stopped taking the drugs. She was labeled a ‘’defaulter’’ and re-started medications when her symptoms returned.
She has been institutionalised in the hospital for about five years now, with repeated efforts of the same impotent medication. Her history is marked, not by the lack of exact dates of previous treatment available, but written on her neck. She has seven tight scars where she has had surgery to remove the large glands, from the right to the left and up towards her ear. The last one is covered.
She trusts us a little more now and we are able to joke in Tajik, though I decide not to recite the faux-part that I made with attempting to write poetically. I look under the cloth and an open hole with an open tract is revealed. It is quite amazing that this disease has been contained in this area and not spread to the rest of her body. This disease has no rules and as always with life, it is dependent on those multiple factors that we can never quite understand. Perhaps, one of those factors is resilience.
She is loved in the hospital by the doctor, the little Uzbek boy that brings her water, by the cleaner who she helps and the hospital school that she attends daily. Her reactions are thankfully so normal in so many ways, she cries like a little girl with the injection of the needle in her bottom, a fate she will have to accept over the next six-to-eight months. She will take seven medications in total per day for six months and then six after that for another probable 12 months at least. I am not sure how much she understands of this. She will remain in hospital because there is no one to take care of her at home. I wonder if time stands a still for her, the normality of her community substituted by a hospital. I wonder if she trusts our persuasive nature, that she will be cured if she takes these ‘’new’’ medicines.
Zulfia will enter adolescence, and will face her disease and her life in the hospital, and if she recovers from her illness, her life will largely be confined to the duties she will respectfully fulfill, but I suspect her schooling days will be limited. If she passes the 18-20 month regimen and is cured of her disease, I wonder if she will remember her time here or will those surgical scars be the only shadows of her past.
We leave the hospital and I feel positive for Zulfia’s future.
She runs behind with her friend hoping for that one last photo. I must remember to give it to her when we visit her again.
*Names have been changed to preserve anonymity