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“I speak at the top of my voice and have mood swings. I enjoy playing with my phone”

When a child has fits the parents usually rush her to the nearest doctor or hospital for what they hope is an instant ‘fix’. Surely, some injection or medicine is enough to cure it? In fact, there can be any number of reasons why fits, or electrical disturbances in the brain, occur – epilepsy, infection, intellectual disability, and mental illness, to cite just a few examples. Will the seizures recur? If so, when? And how often? There are no answers to these questions either. Sometimes, even after undergoing EEG, MRI, CT, spinal tap and a battery of other tests and procedures, the causes may remain unknown. The treatment could be complex: anti-seizure medication is usually prescribed but finding the right medicine and dosage can be tricky.
 
The Kosle family in Bilaspur, Chhattisgarh lived in a state of uncertainty for several years. Muskan (19), daughter of Anirudh Kosle (47) and his wife Madhuri (38), was only four days old when she had fits and had to be hospitalised. Madhuri says that they took the baby to a private hospital and she was on oxygen for a month. Two years later, she started suffering frequent episodes that required hospitalisation. The couple took her to Bhilai when she was nearly four. A doctor there apparently gave the couple a rather incredible prognosis: her brain was impaired because she had been given “too much oxygen”!
 
Madhuri was terrified each time she saw her daughter having fits. Her face would get twisted and her body would twitch uncontrollably. Madhuri would pray: “God, make her well and take my life instead.” Muskan was enrolled in a mainstream school – Progressive Convent School, which was close to their house. She used to cry a lot and even get hit by other students. In fact her fear of going to school apparently set off seizures, and so her parents stopped sending her. When she was around 12, they took her to Mahadev Hospital in Bilaspur, where they gave her medicines that seem to have worked. Since then she has no longer experienced seizures and has stopped taking medication.
 
Anirudh says that Muskan is now “75 per cent better” than before. In childhood she couldn’t walk and needed therapy for her locomotor issues. Madhuri says that therapy expenses impacted their financial stability (Anirudh works for a private company and Madhuri is a homemaker). They were forced to borrow money at a high interest rate, and Madhuri had to sell all her jewellery to repay the loan.
 
But what exactly is Muskan’s disability (or perhaps disabilities)? The couple has attempted to get a disability certificate made for her but were unsuccessful. We received descriptions of her behaviour from both parents: She likes solitude and doesn’t like visitors coming home, although she posed happily enough for photos when Manoj Jangde of JVPAS took Vicky Roy there. She dislikes brushing her teeth but does it first thing in the morning. Her bath comes later, whenever she feels like it. She eats and dresses herself although she can’t tell which is the right side of a garment and sometimes wears it inside out. She doesn’t look directly but sideways at people and objects. If anyone touches or moves her belongings she gets angry; they have to remain where she placed them.
 
Muskan’s older brother Aniket (21) has just finished his first year in an Industrial Training Institute in Bilaspur. She can’t ask for a more patient and loving brother. She frequently gets into a rage when things don’t go her way, and she sometimes strikes Aniket, but he never reacts, and always treats her gently.
 
The way Aniket adores Muskan, so does Anirudh. She is very close to her father and waits impatiently for him to come home. He says that she has an excellent memory and perfectly recalls events and information, but cannot focus on studies.
 
Madhuri says that when they go out as a family, people laugh at Muskan when she speaks in her usual loud voice. This makes her feel terrible, but she adds: “I no longer care what others think or say. I am used to it.” All she wants is for her daughter to be healthy. It would be a bonus if she also received an education and raised a family of her own someday.