NEW DELHI: Students often race against time when taking exams. Neha Mendiratta raced as well. Not against the bell, but against her own lungs. The 18-year-old from Delhi's Jor Bagh area was diagnosed with a lung disease in March last year. The daughter of an autorickshaw driver and a cook, Neha has been on oxygen support from a machine since. Unable to hold herself during her Class XII board exams, she could only stay put for about 90 minutes or so before going into violent cough fits. When the results came out this week, she had passed with an aggregate of 52.6%.
Her parents have put their jobs on hold to tend to her. The machine she uses for respiratory support set them back by Rs 38,000. It works on electricity, so running costs are small. However, it needs to be replaced every two years, which means an expense of up to Rs 1.5 lakh, depending on what her needs are by then, says Neha's father Rajkumar Mendiratta. "We don't even know where we'll get that from now," he says. Fortunately for the family of four, at least the medicines and treatment at Safdarjung Hospital are free.
All of 25 kilos, Neha is curled up in foetal position on the bed in a corner of her oneroom house. Her bony hands cover her face as she coughs from time to time. You'd expect her to whisper bleakly when she talks. Instead, what comes out is a strong, authoritative voice. She does get tired every two to three sentences into a conversation, retreating into foetal position. Yet she calls the shots at home. "Mummy, let it be. You don't know it well enough. Let Papa talk about it," she tells her mother, Leela Mendiratta, who is trying to explain her medical condition.
Neha has Old Pulmonary Koch's disease with bronchieactasis, bronchial hyper-reactivity. Doctors have diagnosed "Type II respiratory failure". "The airways suffer permanent damage in such a case. A patient can recover. But occasionally, not totally. It is a long-standing disease," says Dr Sanjeev Bagai, CEO, Radiant Life Care, New Delhi.
"Without the oxygen supply, I suddenly feel my head pounding. It feels like it will burst any time. My nails turn blue. No matter how hard I try breathing, I feel like nothing is happening," explains the 18-year-old. Her nails are watched closely by family members. A cousin painted them golden for her, a colour Neha just couldn't resist. At her parents' insistence — she left one hand unembellished. "We need to watch her nails very closely," her sister Bhavna, a Class VII student, explains.
She does have to do without oxygen every day for about two hours. "The machine has to be switched off for that much time every day for it to function properly," she says. The Mendirattas moved from a slum close to Lodhi colony to this rented room about two years ago, when Neha's condition began to worsen.
Neha currently spends her time watching TV and sketching a bit. She has taken to the peculiar art form of "coffee painting", where she paints using coffee powder and water. A family friend got her beads and wires to make earrings to pass time as well. Her mother and sister excitedly show off flawless handmade envelopes and wall hangings with mirrors and rhinestones that she has made. Neha hasn't considered monetizing these talents.
For now, Neha is contemplating a correspondence course for her bachelor's degree. "I just want to feel okay again somehow," she says, her eyes drooping. She is sleepy now.
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